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Anyone here diagnosed with Histadelia or Pyroluria?

by 62 · April 12, 2014 3:59 PM

I realize that this question may make most people go "Huh!" however the odds are that someone here may have had experience with it. 3 out of 4 of my kids have been diagnosed with Histadelia (undermethylation) and Pyroluria. Their histamine levels were the highest the doctor had ever seen. We've been on compounded supplements as recommended by the Pieffer Centre for 2 years now with good results - much less anxiety, tantrums, OCD etc. Whole family has been Paleo for several months now. I'm 100% however have been able to manage about 80% for the kids. Would love to have them 100% however we fall over trying to pack school lunches. I am basically sick of all the supplements (as well as the expense) however they are supposed to be on them for life. Has anyone had success getting off their supps for this condition with Paleo? Other experiences?

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20 · April 25, 2012 6:11 PM

I am a GP (primary care physician ) in Ireland and have a big interest in psychiatry.I prescribe the usual antidepessants and antpsychotics for example. I have found the Pfeiffer methods pretty effective in many cases and offer it as an option. Often I combine the standard and the Pfeiffer methods to reduce the side effects of drugs. I have seen hundreds of patients,especaily those with depression with overmethylation (histapenics) getting off meds and remaining well on nutients. The hospitlisation rate is way down and some of my schizophrenic patients are getting degrees. I feel really privileged to be able to help so many people with mental healh problems get well and stay well, thanks to Dr Abram Hoffer MD, Dr Carl Pfeiffer MD and Dr Bill Walsh PhD. Dr Walshs book on Nutrient Power is due for publication later this year. You can get more details on this topic at www.omega3.20megsfree.com. Edmond OFlaherty.

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775 · April 25, 2012 1:34 PM

I have histadelia, and got very sick on a diet with lots of meats, bone broths, kefir etc.

I do best on a diet with lots of fruit, some starch from potatoes etc. not much fat at all (some fat, but high fat makes me very sick), some fresh meat and fresh seafood (which I like to eat raw, cooked meat makes me nauseous), absolutely no ferments at all until all symptoms go away, after that I have been able to eat some ferments for a couple of days here and there. Oh, and I do eat a little a bit of edam everyday, it has mostly tyramine, and not histamine, so it works for me.

The only supplement I take is B6; this works for me, and I am totally symptom free eating like this.

I have been eating like this most my life, until I tried upping up my meat and fat intake not knowing I had histadelia, and my life went to *hit, after I found out that I am histadelic, and changed my diet back to the foods I naturally like, everything has been fine.

A high animal protein diet makes me go absolutely crazy with anxiety, together with insomnia, very bad eczema and also other "fun" things like for example adult ADHD etc. It took half an year with constant eating of ferments, fat and meat for the symptoms to get so bad that I had to think that maybe all the meat and fat doesn't work for everyone. But a mainly veggie diet with low protein etc. keeps me symptom free 100%; I did always suspect that there was a reason why I was drawn to vegetarian foods ever since I was a child.

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501 · April 25, 2012 1:34 AM

Oh boy...

So being the geek I am (and going with the disclaimer that I am NOT a doctor, NOR do I play one on TV)...I did a little research. Histadelia and Pyroluria are two common conditions diagnosed using orthomolecular psychiatry (the third one being histapenia - which is opposite of histadelia). And they are also two conditions you will NEVER find abstracts for in PubMed.

Because these conditions are not accepted as "real" by the mainstream medical community. In fact, there have been NO studies done to support the validity of these conditions.

And the Pfieffer Center is no longer around.

http://drkaslow.com/html/histadelia.html http://jdc325.wordpress.com/2011/08/17/histadelia-a-doctor-writes/ http://en.wikipedia.org/wiki/Orthomolecular_psychiatry http://chapmannd.com/histadelia http://www.addforums.com/forums/showthread.php?t=61703

And there's more. A lot more. The only reason I'm answering is because my "hinky" alarm is going full-blast and there are children involved.

But then...It appears the "accepted" treatments for these conditions involves supplements? So that being the case, eating whole foods (grass-fed, pasture-raised, etc., etc., etc.) that contain the "proper nutrients" should do the trick. I would think. But again, I am NOT a doctor...yada, yada, yada. I think the whole purpose of paleo is to eat whole foods and rely less on supplementation where possible. However, if the supplements are helping, they're a heck of a lot better than anti-psychotics or Adderal or whatever the ADD / ADHD / OCD drug of choice is these days (I can't believe they use anti-psychotics on children, but my nephew was on one for a while for Turrets).

And the question is, because these conditions are not accepted by mainstream medicine and no scientific studies have been done for these conditions, are the "treatments" really valid? Or is the solution whole foods that can supply the nutrition the children need? Can the supplements do any harm if the children remain on them forever?

These days it seems like we every day people need to almost become doctors ourselves in order to stay healthy...

I'm not sure I helped any...sorry...and good luck!

P.S. Has anyone else noticed the ads for ADD / ADHD drugs?

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70 · April 25, 2012 at 10:48 AM

Hi, no 'huh' from me. I suffer from Pyroluria, I don't under or over methylate though (according to my doctor).

It took me 8 years to work out what was causing all my symptoms. Symptoms caused include:

  • Anxiety
  • Depression
  • Chronic fatigue
  • Digestive issues

I tried many different treatments, but the treatment for Pyroluria has been the only thing that has resolved all my symptoms.

Ideally, it would be nice to get off the supplements but I become non-functional pretty quickly without them. I really don't think it.s that bad taking them as its given my health back to me. I could see how it could get quite expensive if multiple family members are taking them though.

It would be nice if someone did discover that Pyroluria was caused by another issue, that could be fixed by a single pill, taken once. Don't think this is likely to happen as Pyroluria seems to have a genetic component (as you can see from your family), and its going to be pretty hard to change someones genes.

I blog about life with Pyroluria at: http://pyrolurialife.com

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1708 · April 24, 2012 at 11:34 PM

Let me preface this by telling you that you made me say "Huh!" as predicted. I have no idea what these medical issues are.

However, I wanted to respond to the idea of paleo in lieu of, or as a replacement to, medicine. It seems a pretty common refrain in the paleo community that, if we can just get our diets dialed in well enough, we can alleviate the need for any and all medicines. I certainly wish you success with that, however, I don't think it's always that likely.

In my case, for instance, I have high blood pressure. This is often very closely tied to dietary conditions, but I have (over one year in to paleo and down a significant amount of weight) been unable to get off of blood pressure medicine. I guess my point is, while I wish you luck on getting your children off medicine, and hope that it is, I would not bet on paleo being the "magic pill" that will do it.

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0 · April 08, 2014 7:10 PM

http://www.pcnzltd.co.nz/Kryptopyroles.php (this is in New Zealand but it does explain that there is a test for it)

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0 · April 08, 2014 at 12:08 PM

Histadelia is an inherited condition characterized by elevated blood levels of histamine. Histamine excess can be manifest as asthma, vasomotor rhinitis, allergic skin disorders with pruritis, excess stomach acid production, saliva, tears, and thin nasal and bronchial secretions, and certain types of vascular headaches. I have go through the treatment for High-histamine levels. Treatment involves the amino acid methionine, which detoxifies histamine by methylating the ring structure forming N-methylhistamine. Calcium helps release the bodies store of histamine, while Zinc aids the calcium-methionine program and provide sufficient relief.

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0 · April 07, 2014 at 10:22 PM

I am having a hard time find doctors that will take me serious. I suffer from depression, anxiety, digestive issues. I would like to test for histadelia and pyroluria. Which specialty doctors do i go for? my primary doctor doesn't know anything. Please help me. Thanks

liz

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0 · April 22, 2013 at 11:06 AM

Hi Yve - I am in Australia and I have Pyrroluria and histadelia, as well as coeliacs. I see Dr Janet Kim at the NPlus Clinic in Sydney, and I buy some of my compounded medicine from the Kingsway Compounding Pharmacy in Sydney (I live interstate so they post it to me), and I buy my other supplements from iherb.com. They are all prescribed to me by Dr Kim. Her website is very informative if you are interested in looking her up.

I have definitely noticed a huge difference after starting the Undermethylator Primer (activated B's and Zinc etc) and know for sure that histamine-rich or histamine-releasing foods send my body completely mental.

I was sick and barely able to function for almost 10 years before I found Dr Kim Sept 2012 and started treatment. She changed my life.

I hope some of this information helps.

Cheers

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0 · April 10, 2013 2:04 AM

Thank you Bunyabushbaby for your very helpful information! My eight year old son is very ill and was just diagnosed with severe histadelia (homozygous) and I am wondering what compounded nutrients and supplements you are using and where they can be ordered from (we are in Australia). The specialist who diagnosed him, had me order Thorne Research Methyguard Plus from the US. He is taking one a day but he still has severe stomach pain daily, and suffers in many other ways. We've changed his diet slightly but may need to make a much more dramatic change to it like the diet you have. Could you please share more of the things you can eat on your diet? It's all a bit overwhelming. Any further help you can give is greatly appreciated!

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0 · March 18, 2013 6:05 AM

I smoke weed for it

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0 · November 07, 2012 3:38 AM

I have been diagnosed with severe histadelia and I can tell those who are skeptical about it that it is very real! It has taken me half my life to find out why i suffer with extreme anxiety, muscle pain, migraines and allergies and under-methylation is central to all my health issues. Unfortunately we have only had access to compounded nutrients as recommended by Pfeiffer(et al) for a short period of time and they are extremely expensive, however necessary. I came off my meds due to the expense and the hassle but after 12 months find myself completely incapacitated again. And after much research and work with a very expensive specialist I have discovered that it is essential to follow a low-histamine (preferably organic) diet, which necessitates cutting out all processed foods, dairy, fermented products (e.g. Vinegar, soy) and some fruits, particularly tomatoes, pineapple, and strawberries. Unfortunately histamines are hard to avoid and are also found in fish & chicken but I find that moderation is the key, but without the support of the specifically compounded nutrients (and a calmag supplement) life is just too difficult. I know it's expensive but if my mum had been able to help me the way u r helping your children, i would have been able to avoid a lot of the debilitating issues that have plagued me for 25 years. Please keep up the good work and listen to your 'parent intuition'. PS. I was told that when i have been on the supplements for a few years I may be able to cut back or not worry too much about missing a week here or there when on holidays etc, which might be something u can look forward to. Best of luck.

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0 · October 23, 2012 at 10:10 AM

Yes! Look into the GAPS diet. It is all about re-establishing proper gut flora.

Its' founder, Dr Natasha Campbell McBride, believes that certain pathogens living in the gut / and an imbalance of healthy internal flora contribute to this problem, and that it will resolve once the gut is healed and sealed, and a healthy gut flora reintroduced.

It is also gluten free and casein free, with the exception of properly fermented milk products, Weston price style.

We have been on this diet for nearly a year and noticed big changes.

All the best,

Nicola

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0 · October 12, 2012 5:19 PM

Are your kids all girls who look very alike? Curious as this is a question on the useal Pyroluria quiz. Through responses like your I am getting some insights into my possible future. I have been doing very well on the Weston A. Price diet, but have adapted it to be very very light on the grains- even if they are milled at home, organic/biodynamic and lacto fermented. My body just doesn't seem to like them. I have been doing even better after a course of Garden of Life Primal Defence Probiotic HSO formula with my PCOS symtoms vanishing. However while reading up on thedamges of copper toxicity (I'm a former vegetarian) I stumbled upon the mention of the condition Pyroluria. Reading through what I could find on it I am now almost certain I have this to a mild o moderate degree with waning and waxing symptoms (favourable as it will supposedly respond very well to supplemental nutrition). I'm also certain it runs in my family (we are of Irish descent) as we have been a fairly mad, abusive, uptight and drunken bunch, not to mention pasty faced. I have made arrangements to get tested. While I'm at it I might as well look into undermethylation. My theory is that if I indeed do have this condition my Weston A. Price diet has provided me some relief just by being so damned nutrient dense. I also went through a severe 2 week long herx reaction that was like some kind of exorcism when I started the probiotics, so whatever was living in me can't have been good. I'll see how I go. Part of me hopes the answer is yes an part of me hopes it is no.In the meantime I am eating all the grassfed organic liver, beef, butter, eggs I can handle. If I'm Pyroluric it would explain why I feel my best on these foods- cause I need to on on B6. Good luck with everything.

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153 · September 20, 2012 3:44 AM

Late reply but I am a histapenic. I found out through genetic testing. Apparently this is why I tend to be depressed (when I'm not manic). Anyway, sorry if this isn't helpful. Thanks for posting this question, I find it all very interesting and it brings up a very interesting discussion.

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7185 · September 11, 2012 at 12:09 AM

I can't tell you about histadelia or pyroluria (because, as HeatherN1321 points out, there's nothing about them on pubmed). I'm skeptical because the claim is that they stem from genetic mutations, but I have looked for the particular genes or SNPs involved and can't find them. I can't find anything about the basic science of how these disorders are supposed to work.

However, I can speak to undermethylation. I take folate and methylcobalamin, as well as trimethylglycine, to support some genetic mutations in my methylation pathway. There's some decent science on this: the 1-carbon cycle, also known as the methylation cycle, or the methionine cycle, is well characterized. And the genetic mutations involved are also fairly well characterized. It's thought that methylation disruption is involved in both autism and chronic fatigue syndrome. Richard Deth of Northeastern University published an interesting article about the redox/methylation hypothesis of autism in 2008 that ties together a lot of the information. For a medical/lay perspective, check out Dr. Amy Yasko's nutrigenomics page, and check out the methylation subforum at phoenix rising.

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25 · September 10, 2012 at 10:54 PM

I have both of these! I hope to eventually lower my daily zinc/b6 vitamin intake, but I have only just started paleo properly and my gut is a mess! Not absorbing anything! I suspect it will be difficult to come off supplements completely unless you are also on a diet that is super high in these nutrients. Replacement rather than a 'cure' in other words.

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0 · September 10, 2012 3:48 PM

It´s useful to read in the Am J Clin Nutr May 2007 vol. 85 no. 5 1185-1196 Histamine and Histamine Intolerance (free) Luis Fernando de Mello campos MD

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0 · August 13, 2012 8:50 PM

Hi Try leakygutcure.com The underlying problem is in the gut, check this out. A naturopath friend of mine told me that his phlloric brother has reduced the suppliments significantly by finding the underlying foods that he is allergic to. He is on a gluten free diet. Check out this site to undertake a diet to cure some of the underlying problems and then apply the 80/20 rule that is 'do the right thing 80% of the time and you can take it a bit easier 20% of the time. I understand the difficulty with looking after not only yourself but your children as well. I also understand the expense, I live in Australia but buy the suppliments from NZ and by the way the suppliments aren't compounded, I buy them individually like activated b6 and zinc etc Hope this helps

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807 · April 25, 2012 1:13 AM

Tough with the school lunches, agreed. However, we are doing our best with our little one who was hospitalized for RSV when she was 4 months, then two years ago again (age 4) with severe asthma attack. I've been Paleo for 11 months now. Every now and then a little white rice. ZERO WHEAT. My little one with asthma has been wheat free since Thanksgiving.

Typically she's suffering through early early spring and now, then through the first part of June. We're in Chico, CA (almond and farming capitol). I get seasonal asthma also.

So far, we are experiencing a little sneezing and itchy eyes, sniffling, but definitely no asthma yet.

I know it's NOT exactly the same, but my two cents. Good luck. Make bigger dinners and have the leftovers. Kids aren't really that picky once you get them off the crap. hold stong, they'll be better off for it (with simple eating).

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-2 · September 10, 2012 at 11:01 AM

Just in terms of helping with cost, I find swansonvitamins.com very cost-effective and good quality. iherb.com is almost as good.

There are a couple of others I've heard of that are supposed to me low cost, but I've never used them personally:

http://www.vitacost.com/ http://www.vitaminshoppe.com http://www.luckyvitamin.com/

But really,

http://www.swansonvitamins.com/ is the best,

with

http://www.iherb.com/

a close second.

Hope you can start getting better stuff, cheaper!

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